Anybody ever had or have Lymphoma?

If you have or had lymphoma,,,could you share your story and the symptoms you had gotten from start to end?

Anybody ever had or have Lymphoma?
Looking back, it turns out I had many classic symptoms, but chalked them up to other causes. I had night sweats, fatigue, unexplained wt loss,recurrent cough/infection. I chalked it up to being overweight, out of shape and other causes. None was really bad enough to send me to the doctor.


On Xmas eve 2005, I was operating my subway train (New York City Transit) when, to make a long story short, a man ended up on the tracks and the train hit him As a result, we get a full medical exam. The doctor found a enlarged liver and spleen. Further followup CT scans showed lymphoma. I saw a oncologist/hematologist who ran further tests including a PET scan, blood work, bone marrow biopsy and a surgical biopsy of a lymph node in my L axilla. The ultimate diagnosis was B Cell follicular NHL. I immediately started intensive R-CHOP, since it was already at stage 4. After about 8 cycles, I was pretty much all clear. Unfortunately less than a year later it was back. I went to Sloan Kettering for a clinical trial that started in Jan 07 and ran til July 07. While it did beat back the disease, it did not eliminate it. They have been "watching and waiting" since then. I just found out yesterday that they want me back on Rituxan this week to try and beat it back a little more. I am in nursing school and graduate in May, so they are willing to not do heavy duty therapy until I graduate, if possible. The rituxan is kind of a stop gap measure for now.


I pretty much feel fine. All through both rounds of chemo I worked and went to school. I has varied side effects, but they will differ from person to person. I didn't lose my hair and nausea was limited and I think I vomitted once.


I am not sure if or what kind of lymphoma you have, but treatment options and prognosis is different for all. My lymphoma is indolent. It grows very slow, so often diagnosis is not made until very late (stage 4) because it shows no signs symptoms sometimes until very late. The good news is that it is easily treated. The bad is that it is not curable.


Ultimately they are preping me for a stem cell transplant, which they hope to do after I graduate in May.


If you have lymphoma, I suggest you seek treatment at a major cancer center. Cutting edge treatment and clinical trials are they way to go. The links below also offer great info, resources, financial aid, referals, support etc. The LRF(lymphoma.org) also has a great peer suppoprt service where they link you up with someone (near you if you want) who has been through it and can be of support.


Good luck.

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